Chronic Illness

[AmateisGal]

His knowledge of construction is of great value. Seriously, these are highly marketable skills and the work is all but impossible to outsource to some "offshore" locale. A young person could do a LOT worse for him- or herself than to go into the construction trades.

I mention this because I find that for beating depression nothing beats being of some practical value to other people. Perhaps your dad could find a way to share his knowledge with youngsters eager for it?

My dad is an introvert, so I don't know that he'd be up for sharing his knowledge with youngsters. That being said, he does spend a lot of time with his girlfriend's grandkids (all under the age of 8) so I'm hopeful he imparts some knowledge to them.

 

[kaiser]

Little doubt in my mind that certain compounds derived from cannabis are effective against certain ailments. Still, there are true devotees of the herb who would have us believe that it is a panacea sent straight from, um, On High. The outrageous claims I've heard are that cannabis illegality was a conspiracy perpetrated by Big Pharma to keep this god-given cure-all off the market. You'd have to be more than stoned to take that on faith.

I'm hearing that CBD is effective against pain, and that it isn't psychoactive. How true is that? I dunno. But it sounds hopeful.

My Wife uses CBD oil ( 5% ) to help deal with migrains. Works pretty good for her most of the time.

 

[tonyb]

My Wife uses CBD oil ( 5% ) to help deal with migrains. Works pretty good for her most of the time.

Topically applied, then?

 

[kaiser]

Topically applied, then?

No she puts 3 to 5 drops under her tongue.

 

[LuvMyMan]

Curious how many of us here at the Lounge deal with chronic illnesses. I have rheumatoid arthritis and migraines, and my neurologist thinks I have fibromyalgia, too. (I really hope not). I'm going to see a new rheumatologist this week for another opinion. I hope I don't have to go on biologics drugs because they're not that great for your body.

I know back in the Era if you had rheumatoid arthritis, you basically ended up crippled. I'm thankful that we have drugs to treat it now, though it's definitely not a cure.

If you do have a chronic illness, how do you cope with it? I think my biggest issue is having to deal with the constant turmoil of never knowing how I'll feel when I wake up. I can go for days at a time where I feel pretty good (I am never 100% or even 90%) and then I'll get hit by a flare and end up in bed for days. I'm thankful that I have a job where I can work from home if necessary.

Wow, sorry to hear about your illness. To answer some of your question, and to sort of be in a similar situation, my Husband has had MS, a bad heart, and battling Cancer. The Cancer has taken to being one of the most immediate deadly problem if placed into a priority of what has become the most serious of his illnesses.

It is an emotional battle to cope with each and every day, as we have a bond that really is more than just being in love, married, and happy together. as we both very strongly believe the Lord put us together. Our life is joined in so many ways it is hard to put into words. We have never even one time had a hard feeling towards one another never argue and find ourselves thinking alike on most everything.

Financially, being the only one bringing in an income now, has put a extreme amount of stress as not all medical bills are being covered by insurance nor benefits he has. We were used to not having to pay much attention to prices of things nor being able to purchase what we would want...but now, have to be careful with every single penny.

Prayer and help from friends and family, (which includes our lovely friends and family here on the Lounge) has made a very positive impact on everything and helped add some spiritual strength as well.

There are times each day or hourly when I have to stop and just be thankful my Husband is still alive and doing what he can to recover and have not lost his leg to Cancer, or lost his life to any of his illnesses. He is a "tuff customer" and throughout his ordeals, never given up and retains his totally wicked at times, sense of humor. The biggest medicine he has depended upon is love and faith. But to explain all the medical treatments and what he takes daily is a long list of things that seem to have given us a miracle, along with the prayers.

When I meet other people at a hospital or doctor's office and they ask how do we get past everything and cope with it all, I tell them what my Husband would say, just never give up and have faith. I have had to make the choice of keeping his leg over losing his life at one point in time, I refused to allow them to amputate his leg, and as time passed, he recovered and is now still recovering. Progress was eventually made and he is now home with me, with in home care helping take care of his medical needs. To say I am thankful is an understatement.

 

[LuvMyMan]

Omg, how could I forget the tinnitus - I guess I'm just so used to it.

It's one of those noises I can't recreate in any way, shape or form to have anyone hear how it sounds - sort of a cross between a screech, static, and something else. It is always there, and the quieter my surrounds are the more I hear it. Thank goodness it doesn't stop me from sleeping.

And I know how I got it. Thirty years of motorcycling and 15 years of drumming will do it to you.

My Grandpa chewed Gum and said it helped it go away at times! Maybe you could give it a try?

 

[LuvMyMan]

I wish Imatrex would work for me. I was finally diagnosed with cervicogenic headaches (the cause of the headaches is in the neck) which I knew all along but no doctor would listen to me. The treatment for them is to get injections in your neck. Well, they didn't work for me. I was SO disappointed. Thus, I have become a medical mystery. I've been chasing after a treatment for 25 years.

Oh my get yourself an Inversion Table. Walmarts for less than a $100.00 shipped to your front door.

 

[scottyrocks]

My Grandpa chewed Gum and said it helped it go away at times! Maybe you could give it a try?

Interesting remedy that sounds like it could make sense.

Many years ago, before I got an implant, I used to chew gum almost all the time. Of course, that was before I was aware of the tinnitus. I stopped with the gum after the implant because the gum sticks to it like glue.

But if it's the chewing action that brings said relief, I'll pay more attention the next time I'm eating.

 

[HistoryCopper]

I suffer from Sjogrens Syndrome which is apparently rare in men. It was identified in the 1930s, so it is retro!

I was seriously injured on the job as a detective and had to retire. I'm in pretty much constant pain, mostly in my spine.

 

[daddy0d0]

The worst part of it is the visual disturbances -- I've had a few so bad that I was temporary blind, which is extremely unsettling the first time it happens. It doesn't happen very often, but when it does it's just another upsetting aspect of it.

The nausea is the hardest thing to take. Exposure to bright sunlight can be a trigger for me, especially if I'm outside for hours at a time, and when I get a sunlight-triggered migraine nausea always comes along with it. A couple of years ago, three of the kids and I went out to the county fair, and it was a very sunny August day, and I didn't have a hat on, just a headrag. Six hours in the sun, coupled with cheap carnival food, and a migraine hit me just as I was in the process of driving us home. I was driving the Plodge, and none of the kids knew how to drive a standard, so I had to keep going until about a mile from home I lost control. I got the car stopped, but I ended up laying in a ditch at the side of the road for a while until we could get moving again.

Doctors haven't been much help to me. I've had prescription stuff before -- I was on ergotamine in high school -- but it didn't really help any more than the Excedrin does. The doctor usually says "well, identify your triggers," which is sort of like the old Smith and Dale routine: "Doctor, it hurts when I do this!" "Well don't do that no more!"

Lizzie have you been checked for food allergies? I used to suffer from migraines also until I went to an allergy doc. I cut out a lot of foods that were triggers for me and for the most part I have been migraine free for a couple of years.

 

[daddy0d0]

I have been dealing with a host of medical issues for a while now.
Type2 diabetes for ten years
Menieres diseases for 17 years
Sleep apnea 9 years. All but sleep apnea under control. Going back to a Cpap machine after years of not using one. Hopefully will work better than before.

 

[Around]

I have been dealing with a host of medical issues for a while now.
Type2 diabetes for ten years
Menieres diseases for 17 years
Sleep apnea 9 years. All but sleep apnea under control. Going back to a Cpap machine after years of not using one. Hopefully will work better than before.

I can relate to some of that. I haven't used a CPAP machine for two years, but now I'm planning to use it again as well as a few pillows like this. Also, I have severe joint pain and arthritis for almost 4 years.

 

[Trenchfriend]

Ah, pillows are a good topic, too!!

I got a "button-pillow" since many years. I will never got anything other. It's heaven! Perfect for my neck. I always use it buttoned knocked over as a thick 40x80 cm. The second part of it is just stored as an auxiliary-exemplar.

 

[William G.]

I’ve got degenerative disc disease, with my last MRI showing five bulges into my spinal nerves — three in the low back, one in the mid-back, and another in my neck. My L4/L5 has ruptured twice and I’ve had surgery once on it.

I spent three years in weekly physical therapy after my last hospitalization and come to find out my insurance only covered six visits, my therapist was basically seeing me for free because she knew I needed it so badly. I had a lot of compensation and alignment problems. My sacrum was out of place and it took all three years of therapy to realign it.

Aside from that, I have some weird thing going on where I swell if I eat the wrong thing. It acts like an allergy, but my bloodwork shows up more like I have a severe infection. I got a reverse osmosis water filter and I’ve gone mostly gluten free, mostly sugar free, and mostly organic. I’ve taught myself to cook really great meals.

The upside is, I’m not on medication, I’m managing pain with turmeric and valerian root, and I’m in better shape than I’ve ever been. I’ve got a great quality of life, an awesome doggie, and a fiancé who helps me get better every day.

 

[blissann]

I've been suffering from chronic arthritis. What helps me to relieve the pain? A small teaspoonful of cinnamon mixed with 2 teaspoonfuls of honey and some hot water every morning. CBD oil every evening. Dosing is tricky when it comes to cannabis. "Start low and go slow" is the consensus.
CBD doesn't get you high though, but provides many of the medicinal properties.

 

[GHT]

Migraines since I was ten years old -- the debilitating kind where you huddle in a fetal position on the bathroom floor and wish you could die to make it stop. Excedrin works for me too, but only if I take it early enough on in the process to abort the headache. If I wait too long, I can't keep anything down, including medication.

How I sympathise with you. Those crushing nauseous headaches that always ended with a vomiting fit and usually passing out rather than actually falling asleep. I had them from birth, probably. I can remember having them as a small child. Redemption came when our surgery had a new doctor.

My mortgage provider requested that I have insurance cover, and the insurer agreed but I had to have a medical. My doctor asked about blackouts, fainting, dizzy spells, so I described my migraine symptoms. The doctor put me in touch with The Migraine Sufferers Organisation. There I discovered the link between diet and migraine. They asked me to list everything I ate in the 24 hours before an attack. By deleting the foods that reoccurred I found that the headaches diminished. I also discovered that eating to a regular routine, greatly helped. There are many different forms of migraine so what helps for one may be of no use to another, but I am forever grateful to that doctor both for his suggestion to contact Migraine Sufferers and for the medication that he said would help. But like Lizzie describes, there's a tipping point, beyond that no medication works, so I always carry the drug that he prescribed.

 

[LuvMyMan]

The operation itself was painless - I was on my back, out cold for 6 1/2 hours.

As soon as I was awake I was kind of myself. But I couldn't talk, being intubated, and I was gesturing for a pad and pencil so I could write. The nurses were putting me off, telling me to take it easy (I hate being told to take it easy) because they knew I wanted the tubes out. They put me out, and the tubes came out I don't know how much later. It could have been anywhere from 2 to 12 hours.

Once detubed, it took another few days for them to remove all the other things that were stuck in my body, the worst being the abdominal drainage tube. It felt it was touching every nerve in its path. Pulling that out felt like my whole body was shoved into an electrical socket, if only for a second.

But then I wanted to get out of bed. As soon as I could I didn't get back into it, sleeping, instead, in a chair. The bed was royally uncomfortable.

They got me a physical therapist pretty quickly. She took me walking around the floor in greater distances each time, until we finally got to the stairway. She wanted me to do the old same lead foot up and down, but I practically ran up and down the stairs. She wasn't happy about it, but I felt great, if not a little dizzy after the first attempt.

And then there was the juggling of my pre-hospital meds. I had been on an insulin pump which needed to be removed pre-surgery. Post-surgery I decided I no longer wanted a machine hanging on me 24/7 so I told them what my regimen had been pre-pump (12 years prior) and they set me up.

The recovery, once I got out of the hospital, however, was bordering on torture. The worst part was water in my left lung which was supposed to drain in a few days but didn't. Almost constant coughing (ever cough with a recently split-open front?), and a cough medicine meant to stop it did little good. I was having trouble eating, and all I wanted to do was sleep, exhausted and nauseous from coughing, on top of the recovery process in general.

Finally, three weeks after leaving the hospital I was back, having a liter or fluid drained from the bottom of my left lung. I instantly felt better. My Dad said I looked like I had come back from the dead.

I went back to work after nine weeks of being out. I was 15 lbs lighter than when I went in, and tired very easily. I normally stand most of the day, but sat down frequently during classes because I had to. I've gained back about half the weight I lost, and am right where I want to be.

No, I still don't have the energy I used to, and psychologically, I have come to a point where I have stared my mortality in the face, and have come to realize that it does exist. I do most of what I used to do, but everything is more difficult. But I'll just have to live with it. No other choice, really.

It's been two years come the 30th, and I've never written it all down, or this much of it, anyway. There is more, but I'll stop with what is here.

My thanks to those who have taken the time to read it, although it feels good to just set it down on 'paper,' so to speak.

Pain is such a horrid thing to have to endure.Glad to know you got passed this.

 

[scottyrocks]

It's been 2 1/2 years since I wrote post #81.

I had forgotten about this thread (no small surprise that I remember much), but I have been reminded of how far I have come since then.

I now do, and have been for a while, just about everything I used to do pre-surgery. I'm still not crazy about putting a lot of stress across my chest so I limit myself to pushups, and the occasional careful lifting of heavy objects when I need to. I've been working on my cars, and am at the end stages of completing a move to a new living space, where I moved everything myself. It's amazing what you can pick up and move when you know how to apply leverage and have plenty of time to do so.

I still get a little light-headed because of the blood thinners, but that's just what it's gonna be.

One thing that has helped me feel as good as I do now is one of those condensed vegetable supplements that you can get in either powder of pill form. I've been drinking, almost daily, one of the powder forms, mixed into a glass of water. It has helped me in ways I never thought it would. My daughter, who is into physical fitness, and yoga, in particular, uses it and suggested I try it. I'm glad I did.

 

[Old Mariner]

I have had Fibromyalgia, along with Sciatica. I managed to heal myself from these using natural and alternative remedies. The Sciatica somehow went away on its own as I focused on the Fibromyalgia healing work. I have used: herbs, supplements, homeopathy, and flower/gem essences. I now mainly deal with Chronic Fatigue Syndrome. For this, I use supplements, Adaptogens, and if I need some extra energy - Mate tea. Thankfully, none of my doctors were against my using these alternative remedies, but rather were supportive of it. One of them even said that he did not want to prescribe something if he didn't need to.

For coping with the CFS, I suppose it helps that I am an introvert, as it does a major dent in one's social life. (No work, etc.) I also am a rather "reflective" type, so "inward focused" matters have helped, this includes my spirituality/spiritual path. This is why I tend to be a very "self-oriented" type of person - I have to know my weaknesses, strengths, etc. and do what I can to be compassionate towards myself.

Low-key hobbies are also a help, as it gives me some sort of activity without burning myself out. It also helps me with my curiosity on the mental level.

The emotional toll is the most difficult for me due to isolation, as I am single. So, I have to be "emotionally selfish" - by this I mean, I have to reserve my "emotional strength" for myself, and not be "a rock" for other people. It's taken me time to work out emotional boundaries, but it's been for the better.

Curious how many of us here at the Lounge deal with chronic illnesses. I have rheumatoid arthritis and migraines, and my neurologist thinks I have fibromyalgia, too. (I really hope not). I'm going to see a new rheumatologist this week for another opinion. I hope I don't have to go on biologics drugs because they're not that great for your body.

I know back in the Era if you had rheumatoid arthritis, you basically ended up crippled. I'm thankful that we have drugs to treat it now, though it's definitely not a cure.

If you do have a chronic illness, how do you cope with it? I think my biggest issue is having to deal with the constant turmoil of never knowing how I'll feel when I wake up. I can go for days at a time where I feel pretty good (I am never 100% or even 90%) and then I'll get hit by a flare and end up in bed for days. I'm thankful that I have a job where I can work from home if necessary.

 

[AmateisGal]

Update:

I was doing really well the past few years and then last October, something happened and my RA suddenly became very active again. I was in soooo much pain that even the opioids weren't helping. I started taking tumeric and I can't believe how much it's helped. Still, it doesn't take care of the fatigue and the overall feeling of body aches, like I have the flu. I went from working out 2-3 times a week (which I absolutely LOVED) to barely making it out of bed.

To make matters worse, my rheumatologist suggested I try acupuncture (been there and done that) and some other "natural" methods. The thing is, she doesn't ask me if I can AFFORD to do those things (I can't). And sorry to say, while natural methods are great for some, insurance doesn't always necessarily cover them, and for a lot of them, you have to go at least once a week or more. If I can't drag myself out of bed and get sick just walking to the car, how am I supposed to go to all those medical appointments? Don't get me started on America's healthcare system...

Unfortunately, my body is a medical mystery and does not conform to the "rules." Treatments that work great for others does not for me. So I am off to visit a rheumatologist at UNMC (University of Nebraska Medical Center) who loves medical mysteries. Well, he'll have one with me! I just want to feel better.

I'm also taking a new injectible med for my migraines (Emgality). While it appears to have reduced the really, really bad migraines, it has not taken care of the daily headaches. I am to the point where I doubt I'll ever be free from them.